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Our Afternoon

Kate has a cold again. I had gotten it last week when Kevin was with us. Fortunately, mine was mild, I am hoping hers will be as well. Hers is accompanied by a cough that I didn’t have. That presents a problem in being in public places. When she coughs or sneezes, it is quite loud. I had planned for us to attend a play this afternoon but changed my mind at lunch because she was coughing so much.

On the way home, I suggested we stay at home. She said she would like to take a nap. I thought that was a good idea. At home, she went back to her bath to brush her teeth. When she came out, I gave her half a Benedryl assuming that might help relieve some of her symptoms while she napped. Then I noticed she went to the kitchen cabinet for a cup. It seemed clear that she was planning for us to go out. I didn’t say anything. I just went to get my jacket. When I got back to the kitchen, I looked out the door to the garage and saw that she was waiting patiently for me in the car.

As I started the car, she opened her door to throw a paper towel into a basket on her side of the car. As I think I have mentioned before, she brings home paper napkins from some of the restaurants where we eat, tears them into smaller pieces, and throws them into the basket. She does the same with the paper towels and toilet paper she uses at home to wipe the saliva from her mouth. When the basket reaches the overflowing stage, Libby, our housekeeper, empties the basket. Kate has never said a word about her habit, and neither have I.

That reminds me of something else that occurred the other night. As we were preparing to leave the house for dinner, she used her hand signals to ask if she should bring one of her family photo albums with us. I just said, “You can leave it here. I don’t think we will need it.” These are just a few more mysteries of Alzheimer’s.

We are at Panera now. She coughed a little after we arrived but that seems to have stopped now. I feel better about that. I had just about decided to leave and go back home. Kate was resistant to that. There are not too many people here now and none very close, so we may stay a while longer.

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A Pleasant Day Yesterday

We didn’t have anything special on our agenda yesterday, but we had a very pleasant day together. She was in a cheerful mood all day. At lunch she asked for some help with names. Specifically, she asked our daughter’s name. I told Jesse. Then she asked the last name. I told her Brewer. That triggered Jesse’s husband’s name, Greg. Then she asked me the name of her brother’s wife. I told her Virginia. With a little frustration, she said, “I knew that. It just wouldn’t come to me. I don’t think I am fully awake yet.”

At dinner last night, we sat in a booth where we have sat many times. On the wall is a print of the painting American Gothic. Each time we see it she asks me the name. She frequently gets American but forgets Gothic. That is what she did last night. Moments later, she asked me the name again. Over the course of our meal she must have asked as many as seven or eight times. It is clear that she recognizes her loss of names and is trying to recover it.

The surprise of the day is that we spent almost two hours in our family room after getting home from lunch. Based on the past, I expected she would want to go to Barnes & Noble pretty quickly, but she asked, “What now?” I told her that I thought it would be nice if we spent some time at home for a while and then we could go to Barnes & Noble. She said, “Okay.” I turned on some music and reviewed income tax information that I will give to our accountant this week. She got her iPad and worked jigsaw puzzles. Since we don’t do this very often, I was curious how long it would last before she wanted a change. It was almost two hours later. Then we went to Barnes & Noble for another hour and a half before going to dinner.

When we got home, I didn’t turn on the TV for the evening news. Instead, I turned on some music and read for a couple of hours while Kate worked on her iPad. It had been a very pleasant day.

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Is it better to know or not to know?

I am currently reading (that is, listening) to The Inheritance by Niki Kapsambelis. It is a fascinating account of two true stories. One is about the efforts of medical researchers to understand Alzheimer’s and uncover a way to prevent and/or cure it. The other is about a family that has experienced the disease over several generations. The part I read this morning deals with the family members’ opportunity to be tested for the gene that is the carrier for the disease. Most of the family chose to know. Others did not. What do you think you would do?

This question led to my reflecting on our decision to find out if Kate’s symptoms were just part of normal aging or if she had Alzheimer’s. Too much time has passed for me to recall clearly when we started asking ourselves that question or exactly how each of us felt about it. I do remember that Kate wanted to know. I also recall that I didn’t have the same desire. Knowing how little there is that one can do to change the ultimate outcome of the disease, I believed we could just go on living our lives as fully as possible.

I recall that by the time we initiated the process for her to be tested, we were pretty sure, but not confident, that she had dementia. Kate had been the first to notice the symptoms five or six years before. I began to notice more after she had mentioned her fear that she might have Alzheimer’s. We seem to have reached the decision to find out at the same time.

When her doctor gave us the results of her PET scan, Kate said she was relieved to know. I remember that she accepted the diagnosis quite calmly. I can’t say the same for me. Immediately, I felt a deep sense of sadness. I choked up. The doctor handed me a tissue to wipe the tears. You might think that if we were already prepared for the answer the doctor delivered to us, I would have responded more like Kate. In retrospect, I think we both responded in ways that are consistent with our personalities. I remember our daughter’s having a bicycle accident when she was twelve or thirteen. As we were with her in the emergency room, it was Kate who was as steady as a rock. I don’t know that I showed it on the outside, but I was a wreck on the inside.

The impact of the news wasn’t limited to that moment. Kate remained calm, but the news did take its toll on her for a short period of time after that. We talked talked a good bit in the weeks that followed. We talked about the implications and how we should respond. When should we tell our children? Our extended family? Our friends?

It wasn’t long until we began to realize that there really was no impact on our day-to-day lives. We began to feel the way we did before the diagnosis, but, for me, the impact has remained as a central part of my life. I made an abrupt change in the way I responded to her forgetfulness and other symptoms of her illness. Now I understood why she was doing so many of the things she did. I became a more understanding husband.

I tend to be a planner and quickly went into planning mode. As her caregiver, I haven’t stopped yet. The plans are always changing as necessity demands. I believe that getting the diagnosis was the right thing for us. Knowing was the catalyst for our taking advantage of our time together. We thought we were already doing that, but the diagnosis caused us to shift into high gear. That is how we plan to live as long as we are able.

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Reflecting on Changes in Our Lives

I have repeatedly commented how fortunate Kate and I have been as we have been learning to live with Alzheimer’s, and that is true. We have been free of any other major health concerns. We have traveled. We visit with friends. We attend many live theater productions as well as a variety of musical events.  We are active and enjoying ourselves. That doesn’t mean, however, that life is the same as it was before Kate’s Alzheimer’s. In an earlier post, I described how much life has changed for Kate. Except for the things I arrange for her, she only works on her iPad and sometimes works in the yard. Let me take a moment to comment on the changes I have experienced.

At the time of Kate’s diagnosis, I was still working and also served as a volunteer with several organizations like our local United Way, our church, and the foundation board of our largest hospital system. Kate’s Alzheimer’s led to my retiring earlier than I would have. My term on the foundation board expired. I dropped one of the United Way committees on which I served. I gave up my Sunday school class and all but one church committee. We were regulars at church for many years. We are much less frequent attenders now. That relates to how slowly Kate likes to get going in the morning. For a short time, I signed us up to participate in the Shepherd’s Center’s programs. Kate enjoyed some of the classes, but I have found the mornings are not a good time to rush. It is much better to let her sleep as long as she wants, take as long as she needs to get dressed, and to spend time relaxing and enjoying her blueberry muffin at Panera.

I changed my exercise schedule at the Y from early in the morning to early afternoon. I have assumed almost all of the household responsibilities but should acknowledge that we have a housekeeper who comes to our house once a week, so not everything is on my shoulders.

Travel, especially international trips, had been a significant part of our lives. Our last big trip was to Switzerland in May 2015. Our two favorite places in the U.S. have been Chautauqua, NY and New York City. Our last trip to New York was in June 2015 with our daughter and son and three of their boys. We continued to attend Chautauqua through last summer, our thirteenth time there. For the first time in quite a while, we will not be there this summer and never again together.

There are a variety of evening activities in which we participated as couples but were primarily for my enjoyment. These include the symphony concerts and meetings of our music club, and a small group of people with a special interest in the symphony who get together with the conductor during the week prior to each concert. We’ve given up all evening events except the music nights at Casa Bella. We are able to attend those because they begin at 6:00 and end before 8:30. Periodically, we are invited to something at night, and I decline. Both of us enjoyed attending movies, but Kate’s interest has all but disappeared.

The good thing is that we are out and about a good portion of every day. That consists largely of a portion of the morning at Panera, lunch, some time at Barnes & Noble or another visit to Panera, and dinner. The most positive aspect of this schedule is that we have a good bit of social interaction throughout the day. Even when we are not in conversation, Kate often sees children being children. She loves watching them. Thus, we have changed our routine a good bit since her diagnosis, but we are still able to be socially engaged, just in a different way than before. We still enjoy doing things together. That’s hard to beat right now, but I know the most difficult part is on the way. We are approaching it little by little.

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A Small Thing, But Another Marker on our Journey

Several years ago, I bought a white board for Kate. I put it on the island in our kitchen where she would see it each day. Each morning, I wrote the day of the week, the date, and a list of things on our schedule for that day. Over the past year, I gave up writing the schedule because Kate was not reading it; however, I have been dutifully writing the day of the week and the date each morning when I went to the kitchen for my breakfast. For at least six months, It looked like Kate did not pay attention to it, but I kept it up. Today I finally broke down and put the white board away. At this point, she seems to have little interest in this information. In case I am wrong, I bought a large digital clock that gives the time, day, and date. At least I won’t have to erase the old and write the new information each day. It will also be easier to read.

I’ve noticed a couple of other new things. One is that she is beginning to dislike whatever drink she gets, even her Dr. Pepper. For a several months, she has been mixing a little of each of the non-soft drink items (at least two types of lemonade, sweet and unsweetened tea, and two flavored teas) and being unhappy with them. She has started asking me to refill her cup. I have been getting her either an Arnold Palmer or a half and half mixture of sweet and unsweetened tea. She hasn’t like those either. In two different restaurants today, she didn’t drink her Dr. Pepper because it didn’t taste right to her. I tasted it. It tasted the way it usually does.

Tonight she worked a few minutes to figure out how to put on her robe. She finally gave up and asked me to do it for her. This is one of those occasions when she was happy to have me do something for her.

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And More Signs

Tonight at dinner Kate pointed her finger at her iced tea and then at herself. I recognized this hand signal as one that asked if she could drink her tea. I said yes, and she did.

At almost 9:25 this evening, I told her the time and suggested that she might want to get to bed. In a few minutes, she asked, “What do I do now?” I told her it would be a good time to put on her night clothes. She looked over to her chair beside the bed and said, “There’s my robe.” She walked over to get it. She held it up. With hand signals, she asked if she should put it on. I told her yes.

These are just two more little things, but they fit a growing pattern of dependence on me to tell her what to do. It makes me sad.

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More Signs of Dependence

Kate and I returned from lunch about thirty minutes ago. I pulled into the garage. As I got out, I noticed that she was still seated and had her seat belt on. I looked at her. She pointed her finger at the passenger door and had a look that told me she was asking if she should get out. I nodded yes. As she got out, I said, “I guess I wasn’t too clear.” She gave me a look that said, “What else is new?” I don’t recall any other time that she has waited for me to tell her she could get out of the car.

Once inside, I said, “I’ll bet you’re eager to get your teeth brushed.” That’s usually the first thing she does when we return from eating. She nodded her agreement. Then she asked, “Middle?” I knew that she was asking whether to use our bathroom or the one off the middle bedroom. I told her she could choose any one she wanted. She looked uncertain, and I said, “How about our bedroom?” Off she went.

We are now in our family where we are listening to Rachmaninov’s Piano Concerto No. 3. Kate had been working jigsaw puzzles on her iPad but is now resting on the sofa across from me. It’s a beautiful day in Knoxville. The sun is shining brightly though it is a bit chilly. We’re sharing a very peaceful moment. I plan to let her rest as long as she cares to do. Then we will probably make our way to Barnes & Noble for the balance of the day. After that, it will be time for dinner.

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A Review of Blue Hydrangeas: An Alzheimer’s Love Story by Marianne Sciucco

Blue Hydrandeas is a novel, but I wouldn’t call it fiction. Yes, Sciucco has created the characters in her book; but the events she portrays are very real. I don’t mean that every Alzheimer’s family experiences the same things that Sara and Jack and their family have encountered; however, any family with a loved one diagnosed with dementia will easily recognize the issues they face.

The story introduces us to a loving couple who run a B&B in “a picturesque Cape Cod village on the edge of Nantucket Sound.” Sara is a painter who loves the Blue Hydrangeas of that part of the country. Jack has retired from a successful business career. All is well until Sara begins to show signs of Alzheimer’s. In the balance of the book, Sciucco relates the many challenges faced by the couple as Jack struggles to maintain life as it once was.

For me there are several things about the book that make it worth reading. First, Sciucco realistically captures so many of the behaviors associated with Alzheimer’s and caregiving. Her background as a writer and a nurse have come together to bring out a real sense of what it is like to live with Alzheimer’s. That includes not just the symptoms of the disease and the response of the caregiver, but also the way in which a caregiver’s thought process works or fails to work.

That leads to my second point. The story brings out an important message for all caregivers. Caring for a person with dementia requires a delicate balance between what I call “head” and “heart issues. Jack’s heart is in the right place. He loves Sara deeply. He wants to do what is right for her as well as for them as a couple. His heart overshadows his head until he finds himself in trouble. Fortunately, there is a happy ending.

A few weeks ago, I saw something about the need for a caregiver to have a team to help with this journey. It can be too stressful to do it all alone. Jack had a team of doctors, family, and friends who could help him, but he had difficulty making the best use of them. I think there are many people just like Jack. All of us can take a lesson from his experience. We need a team, and we need to listen to them carefully as we make what we hope are the best decisions.

Finally, despite Jack’s struggles, this is a heartwarming story. As the book’s title tells us, it is “An Alzheimer’s Love Story” from beginning to end. If you are a caregiver of someone with dementia, you might benefit from reading their story as much as I did.

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Growing Dependence

When we returned home from dinner last night, Kate walked into the family room and turned back to me with a look that I interpreted (correctly, as it turns out) to mean “What do I do now?” Or “What now?” I told her it was time for us to relax and wind down for the day. I added that I would turn on the news, and she could work on her iPad. She went to the back of the house while I took care of a few things in the kitchen. In a minute, she appeared in the kitchen. She still had her coat on. Her hands were in her coat pockets as if she were ready to go out. She didn’t say a word. She just looked at me. I gave her a moment to say something. When she didn’t speak, I told her again that I would watch the news while she worked on her iPad. She turned around and went to our bedroom. I followed her a few minutes later. She was seated in her chair with her iPad as I had suggested. She just forgot the first time I told her. This is becoming so commonplace that it is surprising that she remembered the second time. This often leads to problems coordinating almost everything we do.

Simultaneously, however, she is looking to me for guidance as to what she should do. This growing dependency is evident in her looking to me to tell her what to do when we got home. She wants to do the “right” thing. She just can’t remember what the right thing is or what I have just told her to do. This compliant behavior is easier to deal with than obstinance, but it leads to a sadder feeling on my part. To me this is the most challenging part of being her caregiver. It really bothers me to see her becoming so dependent.

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How quickly the memory fades.

We’re in Barnes & Noble right now. We came here after dropping off Kevin at the airport for his flight back home. A couple of minutes ago, we looked across the table at each other. She pointed to her iPad. The expression on her face signaled a question. At first, I couldn’t figure out what she wanted. Then I realized that she was asking if she could work another puzzle. I told her that would be fine. I wonder why she asked after she had been working them for a full hour or more? One more mystery.

As she went back to her iPad, I said, “I’ll bet Kevin is in the Atlanta airport right now.” She said, “Where?” I repeated myself and then said, “He is changing planes to catch a flight to Lubbock.” Then she said, “Who are his parents?” I said, “You and I.” Then she said, “What’s his name again?” I said, “Kevin.”

In a few minutes, I received a text from Kevin saying he was at the gate for his flight to Lubbock. When I told Kate, she asked, “Where is he going?” I said, “To Lubbock.” She said, “For a job?” I said, “No, he is going home. That’s where he lives.” She answered, “Where has he been?” I said, “Here.” She said, “Oh, that’s right.”

It always seems strange to observe how well she functions in many ways and then how quickly she can say or do something so revealing of her Alzheimer’s. I think of the connections in her brain like an electrical wire that is partially broken but hanging by a thread. Sometimes the electricity flows through despite the break. Other times it doesn’t. It’s hard to predict when each will happen.

As I was writing, she said something. I thought she was ready to go, but she was trying to solve a problem with her puzzle. I asked if I could help her and fully expected her to say yes. She surprised my by saying, “I got it.” Despite her growing dependence, perhaps because of it, she still works hard to do some things on her own.